Patient Reported Outcome – Kathy
I planned to begin dialysis in mid-November 2018 due to an inherited kidney disease. My kidney function was about 5% of normal. I knew my kidney illness was too progressed to keep me off dialysis, but I wanted to delay it as long as possible. The longer I could delay dialysis, the more time before I required a kidney transplant. My Dad and Aunt both had transplants at the age of 52. They each did well for 20 years, so my goal was to start that clock as many years later than they did as I could.
I decided to exercise my Right to Try AMBROSE Cell Therapy just before starting dialysis. Cell therapy helped me to delay that start for about seven months. Most importantly, my energy and quality of life improved beyond my expectations. My improved health provided more time to find a perfect donor. On August 26th, we knew that God heard our prayers and those of our friends. The Mayo Clinic called with an exact match for a transplant. On August 27th, at the age of 55, the transplant was a success.
My diagnosis is polycystic kidney disease (PKD). PKD causes fluid-filled cysts (little sacs) to form in the kidneys. PKD impaired my kidney function and would eventually cause my kidneys to stop working altogether.
With such low function, my doctors were concerned my kidneys could fail at any time. Finding a suitable kidney donor was more challenging for me than is typical. Giving birth to 4 beautiful children elevated my antibody levels. High antibodies mean the new kidney will be seen as a foreigner and raise the risk of rejection, so I needed more time than usual to find a donor.
Fortunately, my only symptom was severe chronic fatigue. I was sleeping and napping a total of 15 hours a day. I also had chronic neck pain that would often wake me up. And, my right hip hurt from years of dancing. When I was 40, I crashed my bike, resulting in a skull fracture, concussion, and unconsciousness.
On November 15th, 2018, I received cell therapy from AMBROSE. The doctors developed a personalized treatment strategy that included IV delivery and injections to address my neck and hip pain.
I returned home the next day and felt good enough – with my doctor’s ok – to delay the start of dialysis. At about a month, my energy took a noticeable turn for the better. I could cut out my 2-3 hour naps during the day and stay up later at night. My husband began kidding me that I had more energy than he did – and he wanted to go to bed before me.
The neck pain resolved in the first several weeks. My hip was slower to make the turn, but at three months, it also stopped hurting.
The resurgence of my energy level has been amazing. It continues two years post-treatment – and now after my transplant.
I want to say that Dr. Jones, the AMBROSE patient consultant, and Matt Feshbach, the CEO of AMBROSE, set realistic expectations all along the way. Based on clinical trials, there was good reason to believe dialysis could be delayed. However, they did not say that I could avoid dialysis or a transplant. Again, based on the medical literature, it was reasonable to expect improvement in my neck and hip pain, but they did not promise I would be asymptomatic as I am now.
I am blessed that my husband, Tom, found AMBROSE Cell Therapy and the Federal Right to Try Act allowed me to access the adult stem cells in my fat. I am looking forward to a long and healthy life
Kathy Valdez Tousignant